It is the opinion of this National Advisory Board that the modernized health care infrastructure required to meet the needs of older adults and individuals with disabilities will only come about as others join with us in promoting and furthering the following six foundational principles:

Speak up for independence by sharing your experience and stories. Let your voice be heard!

Ann’s Story*

I am 85 years old and have been living with COPD for many years. I have emphysema and chronic bronchitis and am on 3 liters of oxygen 24/7. My husband (87) and I live at an independent living and we are hopeful that we never have to move again. With the help of our children and community staff we are able to cover most of our bases. However, if reductions or drastic changes occur with my oxygen supply or supplier I may be in big trouble! I am able to do most ordinary tasks here in my apartment and if the need arises there is Home Health available, although this is not paid for my Medicare. It is all out of pocket. For instance, recently I had a cancer removed from the side of my nose which really got big and needed a skin graft. I was unable to care for this myself but was expertly assisted by a RN made available through my community. However, even though my daily self-care regime is time-consuming and precise I am able to handle this. I also supervise my husband’s daily regime for dealing with diabetes and a variety of medications including eye drops for glaucoma. We attend doctor’s visits together also. I should be attending classes in pulmonary rehab but I am unable to travel with sufficient oxygen to do this. The Wellness Center here has the machinery but not the pulmonary rehab staff to guide me. I started a support group here called Breath of Life and we meet monthly and have speakers and share information in an attempt to help each other. I also participate in a website COPD-ALERT.com which is very helpful. My computer is my brain. Through it I can get answers to many questions and it keeps my doorway open to the world. There is a quality of life we enjoy now which is very important to us and we do not want to lose anything–especially the oxygen and medications which allow us to function. We can solve most problems ourselves. Please don’t erect barriers we cannot handle!

* Stories may be edited according to web host’s discretion.

Lynn’s Story*

Lynn Whitfield has diabetes and is a semi-retired public relations manager who suffered a heart attack late last year and was diagnosed with congestive heart failure (CHF). Following her surgery and prior to discharge, Lynn participated in a Chronic Disease Self-Management program that was developed through a collaboration of federal and state health programs, community health centers, national coalitions and associations of physicians and providers, and private industry. The disease-specific training programs were organized into four training modules: (1) clinical medicine, which provided information on medications, acute illnesses, emergencies, and the types of questions one should ask their physicians and specialists; (2) wellness, which addressed nutrition, physical activity, and emotional and mental health; (3) independent living, which addressed health and human services available in the community; and (4) technology, which detailed the types of technology available to assist with disease-specific self-management techniques. The module also described the process by which certain technologies (such as sub-dermal body sensors) wirelessly transmit health data to a person’s physician so he or she may monitor the individual’s care in a remote location.

Each of the disease-specific training programs contained self-management tools and was available in multiple languages and communication formats. Lynn had access to printed materials, videos, and the Chronic Disease Self-Management program Web site. The Web site offered online interactive health and wellness tools such as nutrition guides, activity logs, diet and meal planning, and disease-specific diaries to record blood sugar levels, heart rate, blood pressure, etc. In the event that Lynn requires a refresher course, she has access to in-person training at various community centers,libraries, places of worship, employer sites or schools.

The training that Lynn received to live with CHF and diabetes also educated her about the types of assistive medical devices available to help monitor her health. In addition to her transtelephonic monitoring system which monitors her pacemaker via the phone, Lynn has a sub-dermal transmitter to monitor and transmit her heart rate, blood pressure, and glucose levels to her Personal Health Tracker on an ongoing basis. The Personal Health Tracker enables Lynn to chart, over time, her blood pressure, heart rate, and blood glucose levels. By viewing daily, weekly, and monthly graphs and charts on her computer, Lynn can determine the times of day when her blood glucose levels or blood pressure spike or dip into a dangerous range. Equipped with this information, Lynn can adjust her diet, activity level, and/or medication to ensure her health status and vitals stay within an acceptable range.

Lynn’s sub-dermal transmitter also wirelessly transmits information to her primary care physician (PCP) who serves as the medical home of Lynn’s health information. The PCP’s staff is alerted of any irregular functioning that requires medical assistance. Lynn and her PCP determined that Lynn would also upload information from her Personal Health Tracker to the PCP’s office on a monthly basis. Lynn’s personal health information becomes part of her quality health record which is coordinated by her physician. Serving as Lynn’s medical home, Lynn’s PCP can coordinate additional follow-up or referral to specialists based on the information received from Lynn and her sub-dermal transmitter. In the event that Lynn’s health requires input from a specialist, Lynn’s PCP can authorize the ancillary provider to have secure access to Lynn’s quality health record.

Please note: These are representations and not actual people.

Leticia’s Story*

Leticia Reyes is 27 years old and was recently placed in an intermediate care facility for the mentally retarded (ICF/MR) after the sudden death of her mother. Leticia has autism and participated in a supported employment program through her high school that assisted her to get a job at a local florist. In addition to working part time, Leticia participated in music classes at her neighborhood cultural center playing traditional Spanish music at various festivals. The ICF/MR facility where she was place was located 10 miles away from her job, the community where she grew up, and all of her friends. Since the facility did not provide transportation to and from work, Leticia was forced to quit her job at the florist and could no longer participate in the music classes at her cultural center. During Leticia’s stay at the ICF/MR facility, she experienced stress and anxiety because she couldn’t participate in her music classes. She expressed to her care manager that she wanted to leave the facility and live closer to the florist so that she could continue to work, play music, and see her friends.

The state where Leticia lives received a CMS grant for the Money Follows the Person (MFP) initiative. With the help of a care manager at the ICF/MR facility, Leticia applied to transition out of the facility and move to an independent living home in her old neighborhood. While the MFP initiative would allow Leticia to transfer out of the ICF/MR facility, the state’s Medicaid state plan did not cover personal assistance services in an independent living home. With the right supports and services, Leticia could live in her own apartment. However, Leticia has not been able to accumulate savings and did not have an income that would make housing affordable.

We envision a future in which Leticia is able to live in the environment of her choice and self-direct the services she needs to live independently. The following represents a futuristic scenario of Leticia’s life in a modernized infrastructure.

After the death of Leticia’s mother, one of the state’s Self-Directed Support Coordinators (SDSC), Norma Davidson, contacted Leticia to assist her in her recent life transition of living without her mom. Soon it was determined that Leticia required housing. Leticia chose to live in an independent living home in the community where she was raised. With Norma’s assistance, Leticia developed a Self-Directed Life Plan that listed all of Leticia’s personal goals, objectives, and preferences for the services she required to live in the community. Once Leticia transitioned to her new home, she began to self-direct the personal care services she needed and paid a friend at the cultural center to assist her with laundry, shopping, organizing her daily activities, etc. Since playing music serves as a therapeutic outlet for Leticia, she self-directed a portion of her budget to purchase a new guitar case that enabled her to carry her guitar with less effort to more places. Leticia continues to work part time at the florist, play traditional Spanish music at local festivals and churches around her community, and socialize with her friends in the community where she has lived all of her life.

Please note: These are representations and not actual people.

Dale’s Story*

At 27 years old, Dale Harris suffered a spinal cord injury while fighting in Iraq. His injury caused paralysis from the waist down. Upon returning home to his wife and two-year-old child, Dale required home and vehicle modifications to make his environment more accessible. He also required intensive outpatient counseling and pharmacological regimen to assist with his post traumatic stress disorder (PTSD). Dale’s wife, Julie, went to work full-time to help the family meet its financial obligations. Dale participated in an innovative government-funded program that pulls resources from various programs, such as Ticket to Work, Medicaid, and Veterans Affairs, to create an individualized budget from which he could self-direct the purchase of various services and supports he needed to recover from PTSD, continue home modifications, and become economically self-sufficient. Through the Self-Directed Support Plan (SDS-Plan) program, Dale allocated his budget toward home modifications, online classes to obtain his degree, and PTSD recovery programs. Upon receiving his degree in computer assisted drawing (CAD), he obtained employment with a company that specializes in universal workplace design, development, and reengineering. Dale’s employer works collaboratively with a supportive employment agency that receives state and federal grants to retrofit universal design in existing workplaces that seek to hire persons requiring workplace adaptations. As a universal design CAD-technician, Dale assists employers to design and reconfigure their work places to facilitate accessibility by all individuals, regardless of age or disability.

To ensure that he did not lose his health and long term service and support benefits upon garnering his first paycheck, Dale’s employer created a program that provides cash benefit to employees in lieu of participating in the employer’s health insurance program. Dale utilized this benefit to participate in a reconfigured Medicaid Buy-In program that provides a gradual step-down or partial disability allowance as his income steadily increases. This program enables people with disabilities to enter the workforce and obtain gainful employment without losing health and long term service and support benefits. As Dale continues to work, the Medicaid Buy-In program will enable him to purchase the services he requires to manage his PTSD, continue his home and vehicle modifications, and maintain successful employment.

Please note: These are representations and not actual people.

Payton’s Story*

Payton Johnson is 39 years old, was born with spina bifida, and uses a wheelchair to mobilize. Growing up with computers and technology, Payton realized very soon that he could live anywhere and do anything he wanted to do with improved technological assistive devices. Upon graduating with dual degrees in business management and engineering, Payton aimed his attention at the world of technology to improve assistive devices for persons with disabilities. Payton established a partnership between a wheelchair manufacturer and a vehicle manufacturing company to co-design a hydrogen fuel cell vehicle equipped with an independent mobility device (IMD) that dually serves as the driver’s seat as well as an electric wheelchair. Once in motion, the vehicle automatically charges the lithium-ion battery imbedded in the wheels of the IMD, which can also be charged with alternative power, solar power, or through a regular electric charger.

As the driver’s seat, the IMD can wirelessly transmit data—such as scheduled daily activities and contact lists—from the user’s PDA cell phone to the vehicle’s data system. Both the IMD and the vehicle facilitate voice-activated calling in addition to transcribing voice command to e-mail. The IMD seat fabric is equipped with smart skin technology that monitors body temperature, provides heat or cool relief, detects body hot spots, and memorizes seat positioning. The IMD alerts the user to change positions when it detects heightened pressure on the body and the potential for pain or a decubitus. The IMD is also equipped with peripheral devices such as blood pressure and heart rate monitors that transmit the health data to an on-board data system that can wirelessly transmit the data to the user’s personal health record or physician’s office.

Since the IMD is able to store information from the user’s PDA such as a daily calendar, the voice command capability can remind the user of upcoming appointments or notify the user to take medications at specific times. The IMD’s databank can also memorize the footprint of a house or structure and respond to voice activated commands to maneuver throughout the home or a structure such as a grocery store or shopping center. The IMD can also alert emergency services in the event of an emergency situation.

Please note: These are representations and not actual people.

Share Your Story

Tell Your Story

Many of us have our own personal reasons for getting involved—or just tales of the work that’s needed or has been accomplished. We’d like to hear your story.

The information and links provided here are a courtesy. The National Advisory Board does not necessarily endorse or share the views contained in any article, report or web site. No link provided here should be considered an endorsement of any opinion, product or service that may be offered in the article or at the linked-to site.